Diverse demands and resources among racially/ethnically diverse caregivers.

OBJECTIVES: The family caregiver population in the US is growing in conjunction with greater numbers of older adults with serious illness and complex care needs, and is becoming increasingly diverse. This study described and compared resources, demands, and health outcomes among diverse family caregivers by race/ethnicity. DESIGN: This study was a cross-sectional secondary analysis of nationally representative data collected for Black/African-American, Asian American & Pacific Islander, Latino/Hispanic and non-Latino/Hispanic white caregivers (n = 2,010) in the Home Alone Revisited Study. We described available resources (e.g. income, paid help, social support) and demands (e.g. medical/nursing task performance) by racial/ethnic group. Using survey-weighted logistic regression, we examined relationships of resources and demands with caregiver outcomes (i.e. heath status; strain; depressive symptoms) by race-ethnicity controlling for socio-demographic variables. RESULTS: Distribution of resources and demands was similar by race/ethnicity, except for higher income for non-Latino/Hispanic white caregivers. Nearly half assisted with personal care (47.5%) or medical/nursing tasks (49.7%). Higher social support and satisfaction with social relationships was associated with positive health outcomes regardless of race/ethnicity, while income was consistently associated with positive health outcomes only for non-Latino/Hispanic white caregivers. Medical/nursing task performance was significantly associated with negative health outcomes for Asian American & Pacific Islanders in multivariable models. DISCUSSION: Many caregiving demands and tasks are similar by race/ethnicity and represent considerable investment of time, energy and care. Differences in the effects of resources and demands by race/ethnicity should be explored in future research as they may have implications for assessment and planning of culturally and linguistically appropriate interventions.

Evaluation of a care management program on family caregivers of persons with dementia.

As the U.S. population ages, dementia due to Alzheimer's or other disease is concerning for healthcare providers. Family caregivers (FCGs) of persons with dementia (PWDs) may experience negative outcomes. The University of California, Davis, Health (UCDH) Alzheimer's and Dementia Care (ADC) Program provides care management for PWDs and their FCGs. This pilot study evaluates the program's effect on FCG depression, strain, and distress. Despite an increase in dementia severity in PWDs, FCGs experienced decreased levels of depression, strain, and distress following 12 to 18 months in the UCDH ADC Program. Other findings include PWDs experiencing reductions in severity of neuropsychiatric symptoms and remaining at home with FCGs. Despite limitations, such as a relatively small sample size and lack of sample diversity, this pilot study demonstrated positive outcomes to both PWDs and their FCGs and contributes to the literature supporting dementia care management programs. Future projects should address these limitations to understand the experiences of a diverse population and to make dementia care management programs sustainable.

Mental health needs and service use in a national sample of adult cancer survivors in the USA: has psychosocial care improved?

OBJECTIVE: This study aims to estimate and test temporal differences in mental health (MH) need and service use among adult cancer survivors nationally before and after important policy recommendations for psychosocial cancer care. METHODS: Adults (n = 58,585) from the National Health Interview Survey, 2005 and 2010, were categorized as having (1) no chronic disease, (2) chronic disease other than cancer, (3) cancer without other chronic disease, and (4) cancer with other chronic disease. In these groups, we compared psychological distress, MH visits, and unmet need for MH services. Survey-weighted logistic regression was used to model these variables as functions of disease status and sociodemographic covariates and the interactions of disease status and survey year. RESULTS: Whereas the proportion of individuals with psychological distress and MH visits was significantly higher in 2010 versus 2005 for the no chronic disease group, the only group with significantly lower unmet need in 2010 versus 2005 was the cancer with other chronic disease group (5.3% vs. 3.0%, p < 0.05). In adjusted models, cancer survivors with other chronic disease had significantly lower odds of unmet need in 2010 (odds ratio 1.38; 95% confidence interval 0.85, 2.25) than in 2005 (odds ratio 3.32; 95% confidence interval 2.28, 4.83). CONCLUSIONS: We find evidence of MH care quality improvement among cancer survivors between 2005 and 2010, a period that coincides with policy and clinical attention to psychosocial cancer care. These efforts may have reduced, but not eliminated, unmet need for MH services among cancer survivors.

Existing data sets to support studies of dementia or significant cognitive impairment and comorbid chronic conditions.

BACKGROUND: Dementia or other significant cognitive impairment (SCI) are often comorbid with other chronic diseases. To promote collaborative research on the intersection of these conditions, we compiled a systematic inventory of major data resources. METHODS: Large data sets measuring dementia and/or cognition and chronic conditions in adults were included in the inventory. Key features of the resources were abstracted including region, participant sociodemographic characteristics, study design, sample size, accessibility, and available measures of dementia and/or cognition and comorbidities. RESULTS: 117 study data sets were identified; 53% included clinical diagnoses of dementia along with valid and reliable measures of cognition. Most (79%) used longitudinal cohort designs and 41% had sample sizes greater than 5000. Approximately 47% were European-based, 40% were US-based, and 11% were based in other countries. CONCLUSIONS: Many high-quality data sets exist to support collaborative studies of the effects of dementia or SCI on chronic conditions and to inform the development of evidence-based disease management programs.

Evaluating the Impact of an Evidence-Based Practice Education Program in a Nurse Residency Program on Evidence-Based Practice Beliefs, Implementation, and Competency.

This quality improvement project examined implementation of the John Hopkins Nursing evidence-based practice (EBP) model, a standardized EBP education curriculum, in a hospital-based nurse residency program. We found that EBP education increased nurse residents' EBP beliefs, implementation frequency, and competencies. Our findings suggest that adopting existing EBP curricula is a convenient and effective approach to EBP education. Staff development professionals should continue to support and advocate for the adoption of EBP education within their organizations.

Breast Cancer Survivors' Satisfaction and Information Recall of Telehealth Survivorship Care Plan Appointments During the COVID-19 Pandemic.

OBJECTIVES: To examine patient satisfaction and information recall after telehealth breast cancer survivorship visits with a nurse practitioner. SAMPLE & SETTING: Female survivors of breast cancer after their first visit with a nurse practitioner in the outpatient survivorship clinic post-treatment. METHODS & VARIABLES: Participants included female survivors who were originally diagnosed with stage 0-III breast cancer and have since completed an initial telehealth appointment to review the survivorship care plan. Survivors were invited to complete a 20-question electronic survey about their satisfaction and recall of visit information. RESULTS: 62 participants completed the survey and indicated an overall high level of satisfaction with telehealth survivorship appointments. Most recalled key survivorship information from the visit and felt the appropriate amount of information was discussed. Overall satisfaction was significantly correlated with the length and convenience of the appointment, and the personal manner and technical skills of the nurse practitioner. Survivors' age was not associated with significant differences in overall satisfaction. IMPLICATIONS FOR NURSING: Telehealth for initial survivorship visits demonstrated high satisfaction with telehealth and the overall visit as a low-cost intervention to treat symptoms.

Virtual Reality for Symptom Management in Patients Undergoing Hematopoietic Stem Cell Transplantation: A Quality Improvement Initiative.

OBJECTIVES: To evaluate the effects of virtual reality (VR) on symptom distress, such as depression, anxiety, and pain, experienced by individuals receiving allogeneic hematopoietic stem cell transplantation. SAMPLE & SETTING: 20 participants aged 19-70 years (median age of 56.5 years) who were hospitalized in an academic setting received as many as two sessions of VR per week for two weeks. METHODS & VARIABLES: Before and after each session, participants completed the revised Edmonton Symptom Assessment Scale (ESAS-r) to evaluate their symptoms. Paired t tests were later conducted. RESULTS: VR sessions showed significant improvement in 8 of the 10 symptoms addressed in ESAS-r. IMPLICATIONS FOR NURSING: VR can improve symptoms in patients following hematopoietic stem cell transplantation in a hospital setting, provide a low-cost intervention to treat symptoms, and support future investigations exploring how VR affects prolonged hospitalizations related to distressing symptoms.

Home Oxygen Therapy: Assisting and educating caregivers and those receiving supplemental oxygen.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Using a Mechanical Lift at Home: Preparing family caregivers to use lifts for transfers.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Implementation of a Statewide Web-Based Caregiver Resource Information System (CareNav): Mixed Methods Study.

BACKGROUND: With the aging population, family caregivers provide increasingly complex and intense care for older adults and persons with disabilities. There is growing interest in developing community-based services to support family caregivers. Caregiving occurs around the clock, and caregivers face challenges in accessing community-based services at convenient times owing to the demands of care. Web-based resources hold promise for accessible real-time support. CareNav (TM), a caregiver resource information system, is a web-based platform designed to support real-time universal caregiver assessment, a record of client encounters, development of a care plan, tailored information and resource content, access to web-based caregiver resources, the capacity to track service authorization and contracts, and secure communications. The assessment includes needs and health conditions of both the care recipient and caregiver; current resources; and priorities for support, information, and referral. In 2019, the California Department of Health Care Services funded the 11 nonprofit California Caregiver Resource Centers (CRCs) to expand and improve family caregiver services and enhance CRC information technology services. Deployment of a statewide information system offered a unique opportunity to examine structures and processes facilitating implementation, providing feedback to the sites as well as lessons learned for similar projects in the future. OBJECTIVE: The aim of this paper was to describe the statewide implementation of the comprehensive CareNav system using the Consolidated Framework for Implementation Research as an organizing structure for synthesizing the evaluation. METHODS: This mixed methods study used two major approaches to evaluate the implementation process: a survey of all staff who completed training (n=82) and in-depth qualitative interviews with 11 CRC teams and 3 key informants (n=35). We initially analyzed interview transcripts using qualitative descriptive methods and then identified subthemes and relationships among ideas, mapping the findings to the Consolidated Framework for Implementation Research. RESULTS: We present findings on the outer setting, inner setting, characteristics of the intervention, characteristics of the staff, and the implementation process. The critical elements for success were leadership, communication, harmonization of processes across sites, and motivation to serve clients in more accessible and convenient ways. CONCLUSIONS: These findings have implications for technology deployment in diverse community-based agencies that aspire to enhance web-based services.

Caregiver Characteristics and Outcomes Associated With Level of Care Complexity for Older Adults.

Care in the home is increasingly complex, with family caregivers now expected to take on aspects of care previously managed by nurses and other health professionals. In a national sample of caregivers of older adults, we examined predictors and outcomes of level of care (low, medium, high) based on caregiving hours and counts of activities of daily living (ADLs) and instrumental ADLs supported. Characteristics associated with high level of care include Hispanic or "other" race/ethnicity, being unemployed, and specific care recipient conditions (e.g., Alzheimer's disease/dementia, cancer, mobility limitations). High compared to low level of care is also associated with caregiving difficulty and unmet needs. These findings underscore the need for targeted interventions and nursing research to further understand the features and dynamics of care complexity. Such research can inform family-centered interventions, health care system redesign, and health policies to support family caregivers of older adults engaged in complex care. [Research in Gerontological Nursing, 14(3), 117-125.].

Using a Mechanical Lift at Home.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Trust and shared decision-making among individuals with multiple myeloma: A qualitative study.

BACKGROUND: Multiple myeloma (MM) is an incurable cancer with complex treatment options. Trusting patient-clinician relationships are essential to promote effective shared decision-making that aligns best clinical practices with patient values and preferences. This study sought to shed light on the development of trust between MM patients and clinicians. METHODS: Nineteen individual semi-structured interviews were conducted with MM patients within 2 years of initial diagnosis or relapse for this qualitative study. Interviews were recorded and transcripts were coded thematically. RESULTS: We identified three main themes: (1) externally validated trust describes patients' predisposition to trust or distrust clinicians based on factors outside of patient-clinician interactions; (2) internally validated trust describes how patients develop trust based on interactions with specific clinicians. Internally validated trust is driven primarily by clinician communication practices that demonstrate competence, responsiveness, listening, honesty, and empathy; and (3) trust in relation to shared decision-making describes how patients relate the feeling of trust, or lack thereof, to the process of shared decision-making. CONCLUSION: Many factors contribute to the development of trust between MM patients and clinicians. While some are outside of clinicians' control, others derive from clinician behaviors and interpersonal communication skills. These findings suggest the possibility that trust can be enhanced through communication training or shared decision-making tools that emphasize relational communication. Given the important role trust plays in shared decision-making, clinicians working with MM patients should prioritize establishing positive, trusting relationships.

Home Oxygen Therapy.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Managing Home Infusion Therapy.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Social Determinants of Health: Underreported Heterogeneity in Systematic Reviews of Caregiver Interventions.

BACKGROUND AND OBJECTIVES: Although most people have some experience as caregivers, the nature and context of care are highly variable. Caregiving, socioeconomic factors, and health are all interrelated. For these reasons, caregiver interventions must consider these factors. This review examines the degree to which caregiver intervention research has reported and considered social determinants of health. RESEARCH DESIGN AND METHODS: We examined published systematic reviews and meta-analyses of interventions for older adults with age-related chronic conditions using the PRISMA and AMSTAR 2 checklists. From 2,707 papers meeting search criteria, we identified 197 potentially relevant systematic reviews, and selected 33 for the final analysis. RESULTS: We found scant information on the inclusion of social determinants; the papers lacked specificity regarding race/ethnicity, gender, sexual identity, socioeconomic status, and geographic location. The majority of studies focused on dementia, with other conditions common in later life vastly underrepresented. DISCUSSION AND IMPLICATIONS: Significant gaps in evidence persist, particularly for interventions targeting diverse conditions and populations. To advance health equity and improve the effectiveness of interventions, research should address caregiver heterogeneity and improve assessment, support, and instruction for diverse populations. Research must identify aspects of heterogeneity that matter in intervention design, while recognizing opportunities for common elements and strategies.

Family Caregiving in Serious Illness in the United States: Recommendations to Support an Invisible Workforce.

Family caregivers provide the vast majority of care for individuals with serious illness living in the community but are not often viewed as full members of the healthcare team. Family caregivers are increasingly expected to acquire a sophisticated understanding of the care recipient's condition and new skills to execute complex medical or nursing tasks, often without adequate preparation and support, and with little choice in taking on the role. This review draws on peer-reviewed literature, government reports, and other publications to summarize the challenges faced by family caregivers of older adults in the context of serious illness and to identify opportunities to better integrate them into the healthcare workforce. We discuss promising approaches such as inclusion of family caregivers in consensus-based practice guidelines; the "no wrong door" function, directing consumers to needed resources, regardless of where initial contact is made; and caregiver-friendly workplace policies allowing flexible arrangements. We present specific recommendations focusing on research, clinical practice, and policy changes that promote family-centered care and improve outcomes for caregivers as well as persons with serious illness. J Am Geriatr Soc 67:S451-S456, 2019.

Unplanned Hospitalization Among Individuals With Cancer in the Year After Diagnosis.

PURPOSE: Reducing acute care use is an important strategy for improving value in cancer care. However, little information is available to describe and compare population-level hospital use across cancer types. Our aim was to estimate unplanned hospitalization rates and to describe the reasons for hospitalization in a population-based cohort recently diagnosed with cancer. MATERIALS AND METHODS: California Cancer Registry data linked with administrative inpatient data were used to examine unplanned hospitalization among individuals diagnosed with cancer between 2009 and 2012 (n = 412,850). Hospitalizations for maintenance chemotherapy, radiotherapy, or planned surgery were excluded. Multistate models were used to estimate age-adjusted unplanned hospitalization rates, accounting for survival. RESULTS: Approximately 67% of hospitalizations in the year after diagnosis were unplanned, 35% of newly diagnosed individuals experienced an unplanned hospitalization, and 67% of unplanned hospitalizations originated in the emergency department (ED). Nonmalignancy principal diagnoses most frequently associated with unplanned hospitalization included infection (15.8%) and complications of a medical device or care (6.5%). Unplanned hospitalization rates were highest for individuals with hepatobiliary or pancreatic cancer (2.08 unplanned hospitalizations per person-year at risk), lung cancer (1.58 unplanned hospitalizations), and brain or CNS cancer (1.47 unplanned hospitalizations), and were lowest among individuals with prostate cancer (0.18 unplanned hospitalizations) and melanoma (0.25 unplanned hospitalizations). CONCLUSION: The population burden of unplanned hospitalization among individuals newly diagnosed with cancer is substantial. Many unplanned hospitalizations originate in the ED and are associated with potentially preventable admission diagnoses. Efforts to reduce unplanned hospitalization might target subgroups at higher risk and focus on the ED as a source of admission.

Patient Perceptions of Their Own Data in mHealth Technology-Enabled N-of-1 Trials for Chronic Pain: Qualitative Study.

BACKGROUND: N-of-1 (individual comparison) trials are a promising approach for comparing the effectiveness of 2 or more treatments for individual patients; yet, few studies have qualitatively examined how patients use and make sense of their own patient-generated health data (PGHD) in the context of N-of-1 trials. OBJECTIVE: The objective of our study was to explore chronic pain patients' perceptions about the PGHD they compiled while comparing 2 chronic pain treatments and tracking their symptoms using a smartphone N-of-1 app in collaboration with their clinicians. METHODS: Semistructured interviews were recorded with 33 patients, a consecutive subset of the intervention group in a primary study testing the feasibility and effectiveness of the Trialist N-of-1 app. Interviews were transcribed verbatim, and a descriptive thematic analysis was completed. RESULTS: Patients were enthusiastic about recording and accessing their own data. They valued sharing data with clinicians but also used their data independently. CONCLUSIONS: N-of-1 trials remain a promising approach to evidence-based decision making. Patients appear to value their roles as trial participants but place as much or more importance on the independent use of trial data as on comparative effectiveness results. Future efforts to design patient-centered N-of-1 trials might consider adaptable designs that maximize patient flexibility and autonomy while preserving a collaborative role with clinicians and researchers.

Hospitalization Rates and Predictors of Rehospitalization Among Individuals With Advanced Cancer in the Year After Diagnosis.

Purpose Among individuals with advanced cancer, frequent hospitalization increasingly is viewed as a hallmark of poor-quality care. We examined hospitalization rates and individual- and hospital-level predictors of rehospitalization among individuals with advanced cancer in the year after diagnosis. Methods Individuals diagnosed with advanced breast, colorectal, non-small-cell lung, or pancreatic cancer from 2009 to 2012 (N = 25,032) were identified with data from the California Cancer Registry (CCR). After linkage with inpatient discharge data, multistate and log-linear Poisson regression models were used to calculate hospitalization rates and to model rehospitalization in the year after diagnosis, accounting for survival. Results In the year after diagnosis, 71% of individuals with advanced cancer were hospitalized, 16% had three or more hospitalizations, and 64% of hospitalizations originated in the emergency department. Rehospitalization rates were significantly associated with black non-Hispanic (incidence rate ratio [IRR], 1.29; 95% CI, 1.17 to 1.42) and Hispanic (IRR, 1.11; 95% CI, 1.03 to 1.20) race/ethnicity; public insurance (IRR, 1.37; 95% CI, 1.23 to 1.47) and no insurance (IRR, 1.17; 95% CI, 1.02 to 1.35); lower socioeconomic status quintiles (IRRs, 1.09 to 1.29); comorbidities (IRRs, 1.13 to 1.59); and pancreatic (IRR, 2.07; 95% CI, 1.95 to 2.20) and non-small-cell lung (IRR, 1.69; 95% CI, 1.54 to 1.86) cancers versus colorectal cancer. Rehospitalization rates were significantly lower after discharge from a hospital that had an outpatient palliative care program (IRR, 0.90; 95% CI, 0.83 to 0.97) and were higher after discharge from a for-profit hospital (IRR, 1.33; 95% CI, 1.14 to 1.56). Conclusion Individuals with advanced cancer experience a heavy burden of hospitalization in the year after diagnosis. Efforts to reduce hospitalization and provide care congruent with patient preferences might target individuals at higher risk. Future work might explore access to palliative care in the community and related health care use among individuals with advanced cancer.